Hi. I'll try to make this as short as possible. I have searched the internet and have almost found too much information!
4 years ago I was pregnant with my daughter. Two weeks before conception, something odd happened to me. I couldn't walk straight, my right ear sounded like there was a power generator in it, my face felt wet, I lost the function with the left side of my body. I still have troubles writing (as I'm left-handed)... plus tons of other weird things. I was constantly light headed and felt feverish without a fever. I lost my sense of taste for two weeks.
I went to the doctor. They thought I had a stroke. They thought I had Bell'sPalsy. They thought I didn't get enough B12... so on and so forth.
They gave me a spinal tap (while 4 weeks pregnant) and decided it was MS. I got the MRI after giving birth and it had two small marks on the MRI. I was dx'ed with MS. I've been on shots ever since. The doc said I made the criteria by 1 requirement.
During all of my initial problems, I started to have huge eye problems. I saw flashing lights and ended up with a central blind spot in both eyes. I now have a macular edema. The neurologist says it has nothing to do with the MS.
This got me thinking (through my hours of research). Lyme can cause these problems. Lyme can cause everything that happened to me years ago. In those 4 years, I develped cognition issues, bladder problems, and random things here and there... stiff neck, sore forearm. I wanted to link my eys to everything else and I couldn't do it with the MS. I still see flashing lights and blind spots every day.
I asked about a Lyme test. They said I was tested in 2004 and was negative. I think they just ran the titer but I don't have the results to know for sure. I called my eye doc, day after day, and houded them for a Western Blot test.
I just got the results but haven't heard from the doctor. I need 5/10 in the one section and 2/3 in the other. Well... I'm reactive with 41 KD (IGG) BAND REACTIVE / 23 KD (IGM) BAND REACTIVE.
I don't meet the dx criteria according to the test. I'm reading online that the 23 band is unique to Lyme.
Please help me! I don't want a doctor to dispel me if it is Lyme. I have endured painful shots for 3 years with horrible reactions. I am sure it's unusual for someone to want this disease, but I don't want to take these shots and treat a disease I don't have. I want to know if I have it so I can start treating it.
Yes, it could be lyme. It is good you did your homework!
Your description of symptoms---it sounds very much like what I heard from other lyme patients, including myself. Many of us was misdiagnosed with various other conditions. Lyme disease are well known for mimic various medical conditions. By the way Bell's Palsy is known to occurs in Lyme disease.
My neurologist initially thought I may had MS but realized it does not explained some of the chronic symptoms I have. MS was eventually ruled out along with everything else.
While my western blot do not meet CDC criteria, but with two lyme bands in my spinal fluid and it was enough for my neurologist to put me on Rocephin IV. Behold, a lot of symptoms evaporates or improves.
Be advised lyme bands in spinal fluid are rare findings, only 10-30% lyme patients has it in their spinal fluid.
You will need to find Lyme Literate MD, LLMD for short if you don't know that already, to confirm you do have Lyme disease, and to commence the treatment. With band 41 and 23, and your clinical symptoms it may be just enough for LLMD to determine you do have lyme disease.
The treatment for MS will make lyme disease worse, and that may be the reason why you are experience horrible reactions with these shots.
No it is not unusual for someone to want this disease instead of MS. For one, MS is not curable, and Lyme disease is treatable, but it may takes a long time.
The others will chime in on how to find LLMD. You could start with ILADS.org or tell us where you live, who knows we may know LLMD in your area, and will give you names in private message.
"I just got the results but haven't heard from the doctor. I need 5/10 in the one section and 2/3 in the other. Well... I'm reactive with 41 KD (IGG) BAND REACTIVE / 23 KD (IGM) BAND REACTIVE. I don't meet the dx criteria according to the test. I'm reading online that the 23 band is unique to Lyme."
Here is where we all run smack into different standards set by different authorities as to 'how much is enough' on a Lyme test to make the the doc say 'yes, it's Lyme.'
Ditto what Stargazer says above, and I too have read the same thing about band 23 -- when it shows up on a test, ONLY Lyme can have caused it.
The requirement that you have 5/10 and 2/3 bands on the two part test is not the standard a Lyme specialist would use, especially considering (1) how long as you have been ill AND (2) that you are on immune-system suppressing drugs for "MS". The test you had measures your immune system's reaction to Lyme bacteria, but it does NOT look for actual Lyme bacteria in your blood (tho there is another test that does, but it's not used by docs who are not Lyme specialists).
In your situation, I would without delay find an LLMD (which is patient slang, not an official title, and not a title an MD would use) to evaluate your test results and your history and to quiz you about any other symptoms.
MS is a common misdiagnosis for Lyme, and as Star says, steroids are the opposite of what is needed in a Lyme infection, because the steroids suppress the immune system. MRIs are not helpful, so I understand, in diagnosing Lyme, because the fuzzy spots that show up on an MRI could be MS or Lyme. An LLMD would probably use another test, a SPECT scan, which looks for areas of low blood flow in your brain caused by swelling produced by Lyme; MS will NOT have that effect in an SPECT scan. NonLLMDs don't use SPECT scans, because they think MRIs are just fine. (Not.)
If you need help finding an LLMD, let us know what area you live in or can travel to, and someone here might have a recommendation of an LLMD, but it would be sent to you through the private message function on this system, since we do not post names of LLMDs in the open to avoid harassment of them by local and state medical boards. As Stargazer says, you can also email to
contact [at] ILADS [dot] org
and tell them what area you are in or can travel to easily. ILADS is the main voluntary group for the docs who think progressive thoughts about Lyme. Many or most 'LLMDs' are good docs, but because it is a complex disease, and some supposed LLMDs have wandered away onto side paths thinking they have good diagnostic and treatment approaches, but perhaps aren't. Lyme is still an unfolding disease, and not all docs are created equal in pursuing Lyme.
You might also, when you are established with an LLMD you are comfortable with, consider having your daughter tested as well. It can cross the placenta, but not always, and frankly, Lyme is everywhere, so kids can get infected from a tick bite too. (When I was finally diagnosed, I insisted that my kid be tested too because we had been all the same places, and sure enough the Kid had the same thing I did: Lyme and babesiosis, which is similar to malaria. One difference was that I was terribly ill but the Kid was just a little tired: different immune systems at work.)
I am NOT medically trained, nor is anyone else here that I am aware of, so don't rely on us for medical advice .... but in your situation, I would find an LLMD immediately and consider suspending the steroid injections, tho I don't know if they are supposed to be tapered off. That's why you need an LLMD to advise you.
Let us know if we can help -- I am very sorry to hear of all you have been through. We're here -- wishing you and yours well.
You could very well have Lyme. And you are not the first to (possibly) have been misdiagnosed with a serious disease that Lyme can mimic. I think it is amazing that you even showed a 23 band on your WB given years of immune suppression. I only had a little bit of steroids and I tested officially "negative" on a screening test and a CSF antibody test. I later tested positive on the IgM only at IGeneX. 23 is indeed Lyme specific and should not be ignored.
You will definitely need to see an experienced, well regarded LLMD to get checked out. S/he will probably want to do an antibiotic challenge on you, which is to give you a short course of oral abx (2-4 weeks) and then retest you. Often times, a few dead spirochetes hitting the blood stream wakes up the immune system to start producing antibodies, hopefully enough to show up on a test. There is also a PCR test at IGeneX that looks for the DNA of Borrelia. An LLMD will know the right tests to order for you and how to go about it.
It is extremely unlikely that a mainstream doctor would seriously consider Lyme in you. They are taught to rely on the tests and to be skeptical of positive results if you're not in a highly endemic area or if you can't prove a tick bite or a bulls eye rash. It is probably also a horrifying possibility that you have been misdiagnosed and mistreated for years, and some doctors would react very defensively to that, especially when they have followed the official guidelines for both diseases!
It is the LLMDs who see Lyme for what it really is, and not for some out of date, narrow definition produced by researchers in Ivory Towers who don't actually treat patients. Do whatever it takes to get to a good one, even if you ultimately get treated by one that is closer or less costly. You need an expert for a diagnostic work up. It is also possible that you have both MS and Lyme, each complicating the other.
You will also need to have your daughter evaluated by an LLMD (see if an LLMD will take both of you at the same time). Sometimes it is transferred in the womb. Some kids show symptoms right away, while others show symptoms years later. Does she have any developmental delays or neurological symptoms, physical sensitivities, or odd behaviors? She is still little, so if she does have a case, antibiotics will make a big difference.
I read that testing is tricky in babies born with Lyme, as if they were exposed to it before their body developed an immune system, then the immune system would not recognize Borrelia as foreign. These kids often show no or little antibodies to it. This is where an experienced doctor is critical in order to make a clinical diagnosis based on symptoms.
You must feel a bit overwhelmed! But you can be hopeful in that Lyme is treatable! Just take it one step at a time. Keep us posted!
Lyme vs. MS info... I know you've said there is almost too much information out there, but I thought this might be specific enough to be useful for you. (Columbia is one of the only universities in the US that believes the ILADS side of the Lyme controversy. They have done some good research.)
Telling the difference between MS and neurologic Lyme: Paragraph from Columbia U with a lot of medical-ese, but still informative. It seems to be an overview and is not comprehensive.
Agreeing with all above and adding I was misdiagnosed with MS and Lupus among other illnesses. I was given steroids and wound up in the hospital because steroids are bad for Lyme patients.
Finding an LLMD is the first step. They can rule out MS or Lyme.
Lyme can be cured so hang in there!
I hope you find your infectious disease (ID) doc to be enlightened about Lyme, but the odds are not in your favor -- neurologists and ID docs are usually very similar in their reactions to Lyme.
I hope your ID doc is more enlightened, and certainly give it a try ... any ID doc who thinks more like an LLMD is not likely to advertise the fact, to avoid getting seriously hassled by other ID docs and their professional association, the Infectious Disease Society of America (IDSA). So maybe you find the doc is a closet LLMD ... but don't be surprised if not.
You are right, since LLMD is slang, how do we know we are seeing the right kind of doc? Sadly, it's by trial and error and reputation among patients. (I do not know how anyone found an LLMD pre-internet!)
I would just go to the appointment, give your history and symptoms, and see what the doc says. If s/he doesn't mention Lyme, then you could venture, "Could it be Lyme disease?" And see what the doc says. If the doc scoffs, then you know you will not be 'worked up' (tested etc.) for Lyme at any significant level, but if the doc orders some tests, that could be valuable going forward --
--- and ALWAYS get copies of ALL test results in detail while you are the doc's office. They can be a valuable road map in the future, because of the tendency of the immune system (which the tests measure, on the standard tests) to stop responding to the presence of Lyme after a while, so if you get a test result with any positive indication at all, it could be a clue useful to a future doc. Trying to get copies later (even the following week!) is no guarantee that the lazy person at the front desk will copy EVERYTHING or only the pages s/he thinks you should have -- and they will never, in my experience, ask if you want 'everything.' Docs hate paying for paper and printer toner as much as I do, but that's no excuse.
An idea: call your ophthalmologist and ask if s/he can recommend a Lyme-friendly doc. Ophthalmologists are one of the few specialist groups who really understand Lyme -- soon after I was diagnosed but had already learned that most docs think you're nuts if you 'buy in' to 'all that silly talk about Lyme', I went to see my ophth for a regular check up and felt I should tell him about my recent diagnosis. I found myself mumbling and apologizing (and trust me, that's not my nature to mumble or apologize for nothing), and was shocked that the doc said 'Oh! I'm glad you told me! That's very important to know.' So maybe your ophth knows of a quietly Lyme-friendly doc in case the ID doc doesn't work out. Just a thought.
(Like you don't have anything else to do, or the energy to do it! Hang on!! You're doing fine.)
You're in Pittsburgh area, right? I just looked at the map, and you're very centrally located, the only trick is figuring out how to search online to pick up all the LLMDs who are close but just across a state line. In my experience, once established with an LLMD, the appointments are maybe once a month, so it's not like you'll have to be going there reallllllly often. A good LLMD is worth traveling for.
I just did a quick search for
pennsylvania lyme disease association
and while there may not be a group with that exact name, I got quite a few 'hits' that you might want to look at. I think we here may have already mentioned emailing
contact [at] ILADS [dot] org
.and telling them your location. They can send you name(s) of LLMDs nearby, tho I've never heard back from anyone who found a Lyme doc that way, so don't know how the quality is ... I'm guessing it's variable, just like everything about Lyme, and it is a constantly changing area of medicine.
As you are finding, infectious disease docs and rheumatologists were some of the first docs to focus on Lyme, and they remain locked in the Stone Age for the most part. My LLMD was an immunologist, but he was an outlier generally, so I don't know how friendly immunologists are generally when it comes to diagnosing and treating Lyme. It's hit and miss, but don't let it discourage you.
I can tell you for certain that treatment was definitely worth it, no matter how hard it is to find a doc and figure all this out. Let us know how we can help -- you've already got a good attitude -- next: a good doc. See? progress already!!
I was hospitalized with a loooong list of Lyme symptoms, and the ID doc wouldn't even come for the consultation I asked for because I had already tested negative. I was discharged with a bottle of Vicodin and a shrug and instructions to go to an MS specialist, even though they were convinced I didn't have MS. They essentially said, We don't know what you have, but it's not Lyme.
I have since learned that the IDSA enforces it's opinions within its own ranks. While their guidelines are supposedly "optional," they are NOT optional for any ID doc who wants to remain a member of the IDSA. It almost seems like a Mafia-like organization that demands absolute loyalty, or else... Maybe that is why so many ID docs are downright nasty to patients with Lyme. Your odds of being diagnosed with Lyme by an ID doc is close to zero with your test results.
The sooner you find an LLMD, the better. There are several in PA. Try contacting a local Lyme support group or your state's Lyme Disease Association. Of course, ILADS.org is a good place, too. You can Google "LLMD Pennsylvania" but a lot of requests for LLMDs come up. I don't know if you'll find many names in the responses but it might be worth a try. We don't usually publicly name LLMDs, unless they are already visible of their own choice.
Recommendations from a Lyme support group is great, because they can tell you who is the best and who to avoid. Just because a doc has a great website doesn't mean you'll be happy there. Make sure you choose one with plenty of experience (who has treated thousands of Lyme patients). A wanna-be LLMD might not have the experience to assess you properly.
If you have a sympathetic doctor (maybe the one who ordered the WB), you could ask for a CD57 test. It is for a particular immune cell that is suppressed only by Lyme and HIV. Nearly all late stage Lyme patients are low in it. Lots of LLMDs use this test and having a result in hand might speed along your work up. IGeneX and LabCorp offer it.
Ditto what Rico said I was hospitalized because I was misdiagnosed with MS and Lupus and given steroids which are the worst thing for Lyme patients. Mine was a severe case but I woke up on a ventilator due to that. They told me I had other illnesses too.
The sooner you get to an LLMD, the sooner you can begin a treatment that works.
Thanks, everyone. I was at the ILADS website but didn't get much time to reseach much. I didn't see an obvious link for docs but am guessing I have to email them judging from the post above?
I'll look into support groups during my lunch hour.
I'm in Pittsburgh, a huge medical community, it shouldn't be this hard! Are LLMD's looked at like chiropractors used to be viewed? Is that why most are 'in the closet' so to speak?
I have gathered TONS of medica records, which span over 4 years to try and plead my case. I don't know if this ID has a problem deailng with lyme... they just agreed to see me. I need to do research now!
I also need to note the CD57 test... I never heard of that.
If you ask me about MS, I can tell you hours' worth of info, but not with this disease. There's a lot to learn.
My other hurdle will be if I have to travel to a doctor if my insurance is still taken...
--"I didn't see an obvious link for docs but am guessing I have to email them judging from the post above?" Yes, you have to email them. The 'Lyme deniers' have run too many LLMDs out of practice by accusing them of malpractice, so LLMDs often stay hidden in plain sight. We also do not post LLMD names here in the open for the same reason, with the exception of the ones who have 'outed' themselves publicly, such as being high up in ILADS, the main voluntary group for docs who do not deny Lyme. email to: contact [at] ilads [dot] org and they will email you back with name(s) of docs in your area, so you need to tell them where you are or where you can get to.
"I'm in Pittsburgh, a huge medical community, it shouldn't be this hard!"
-- Too true! Someday this will all be sorted out.
"Are LLMD's looked at like chiropractors used to be viewed? Is that why most are 'in the closet' so to speak?"
"I don't know if this ID has a problem deailng with lyme... they just agreed to see me."
-- All you can do is try, and if the doc is not enlightened, you'll know soon enough.
"My other hurdle will be if I have to travel to a doctor if my insurance is still taken..."
-- You're not alone in that. It's one more hassle of having Lyme.
The insurance thing can be a struggle. That is where a local Lyme support group can be helpful. They can give you a list of names and you can get on the phone to find out who takes your insurance.
But if you had to pay out of pocket to get your life back, would you? I had to come to that point, where I realized the money was less important than my health. I finally realized that the cost of getting tested and diagnosed was nothing compared to continuing on the path I was on. My doc is out of network, so I pay more than if I was in network, but without him and his PA, I would be severely ill and unable to function.
I think one of the hardest realizations of my struggle to get diagnosed was that no doctor was going to take ownership of finding answers for me. Each was going to do their thing, and when they couldn't figure me out, they referred me to someone else.
I had always had respect for the medical profession and it was a sad day when I realized that most of them are just wrong about Lyme Disease. (Then the anger kicked in.) I now realize doctors are like any other group of people (except they're higher paid). Some are honest and humble, willing to see new possibilities. Some are insightful and clever. Others are ambitious, greedy, and arrogant. Some see us with compassion. Others are rigid and dogmatic, only following the rules and protocols without acknowledging that every body is different and there is much we don't understand yet.
The right doctor makes all the difference. Travel, if that is what you have to do. Order the airport wheelchair service if you need it. People fly in from other states and even as far away as Australia to my doc in CA. I stopped complaining about the one hour drive to my doc after I met a gal whose father just drove her 10 hours to get there.
When it comes to dealing with the medical bills and reimbursement from insurance (to the extent available), you might want to consider asking a family member or friend to help you with the paperwork.
I was so addled when I was ill that I couldn't manage doing anything but writing a rent check each month, never mind dealing with medical billing stuff. At one point I called the ins. company and asked how long I had to get my bills in to claim at least some reimbursement, and the weaselly answer I got was: "Soon."
Translation: "When bills you've paid out of pocket get here to the insurance company for reimbursement, maybe we will reimburse some of it, and maybe we won't." Let me guess: they won't.
So ask a family member or friend to deal with that stuff -- getting well is a big enough job all by itself.
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